~ How to Support a Parent in Grief ~

Wisdom from Bereaved Parents of Children Diagnosed with a Syndrome

“People told us that having him would be the hardest thing we ever did.
But they were wrong. The hardest part is not having him.”
Patricia Farmer, Joey, Trisomy 13

If you are lucky enough to have not lost a child, you don’t fully understand how hard it is.

Listen to my story. I will tell it many times as it is a necessary part of grieving.

Don’t judge. It adds to my pain and causes guilt. Just listen.

It does not help to second guess with should have or if only.
I do too much of that myself.

Please be respectful of my feelings and beliefs or unbeliefs.

Words of faith meant to comfort, sometimes hurt.

Say my child’s name. If you want to call her an angel, please let me say it first.

Grieving for my child is every emotion at once, changing momentarily.
Sometimes I feel ok. It is ok to feel ok. It can be a relief to hear that it is.

Do send condolences and cards. They become forever-kept treasures.

Please don’t tell me, a grieving parent, that it is better my child is gone.

Avoid clichés about grief. Just say you are so sorry.

Unless you have lost a child, refrain from saying you know how I feel.

Don’t be afraid to say my child’s name. It brings music to my ears.

Be there; don’t stay away because you don’t know what to say.Be there even if you have nothing to say.

If you can and really want to help; call often,
arrange for meals, and help with siblings.Remember, my other children are hurting too.

Be a friend by staying connected. Still talk to me. Avoidance ends friendship.

Be patient as I try to adapt to such loss.
I am so distracted with thoughts about my child.

He was what I did with my days and nights. What will I do without him?Will I ever feel joy again or find new purpose?

Please don’t inquire about trying again or adoption
so soon after the loss of my son.

Do ask about my child. It gives me comfort to talk about
her and how she blessed our life.

I cannot do this alone. Each day I’m learning how to live with
my “angel in heaven”. Finding others on-line, who also lost a
child with a syndrome, is a bittersweet blessing.

I need to find local grief support to help us begin to cope;
a safe place, where they know child loss is not any easier if expected,
nor any less because he had a syndrome.

It is so important to me that she is not forgotten.When you remember my child’s anniversary or birthday it means the world to me.

A wife who loses a husband is called a widow.
A husband who loses a wife is called a widower.
A child who loses his parents is called an orphan.
There is no word for a parent who loses a child.That’s how awful the loss is.- Jay Neugeboren – An Orphan’s Tale – 1976

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Over the years we have made friends across the country and around the world through our SOFT Membership. It is my belief that every family facing a pregnancy with a possible Trisomy diagnosis needs to connect with SOFT as a very first stop on the Trisomy Journey. A membership in SOFT not only connects you…… Continue Reading

This is a replay of a webinar aired on Februay 27, 2013 11:00 am – 11:45 am Dr. Debbie Bruns discusses the TRIS Project. What it is, why it is and how much your input matters! To enroll your child in the TRIS Project follow this link: http://web3.coehs.siu.edu/tris/PreEnroll.php To learn more about the TRIS Project…… Continue Reading